The Body-Data Craze, the Hype Cycle and Why It Matters

On my way out to visit the Calit2 team that is running the Health Data Exploration project (sponsored by the Robert Wood Johnson Foundation’s Pioneer Portfolio), I read Alissa Quart's excellent piece in Newsweek about the Quantified Self (QS) movement and health. The article covers many of the possible benefits as well as the downsides of self-tracking.

As Quart acknowledges, she also focuses quite a bit on the edge cases, the extreme QSers, painting a picture that can seem a little ridiculous. It’s inevitable; whenever a new technology emerges, a subset of early adopters takes it to the extreme, making the technology and its applications easy for us to mock (see "glasshole").

But, according to the Gartner Hype Cycle, as a technology generates more excitement and attention—on the upward slope of the curve—it starts to draw more important critical attention. And it's at that point that more experimentation occurs and more people engage in the discussion, and start to discover what a technology is good for, what it doesn't do well, and importantly, the diversity of user relationships with that technology. (Different people will use the technology differently and with varying frequency and intensity.) As this more nuanced—and compelling—understanding develops, the technology recovers from the “trough of disillusionment” and begins to climb the “slope of enlightenment,” which is hopefully where we are heading with QS.

Quart's article profiled a number of people for whom QS is a way of life, maybe even an addiction and asks a great question: "What happens to who we are when we can’t stop ourselves from counting on our endless digital abacuses?" But what if QS can be seen less as a habit and more as a skill that one can pull out when the situation calls for it: when one seeks insight about one's health and all the variables that influence it; when one seeks to monitor the effect of a change in habit; or when one wants to hold oneself to one's intentions? One doesn't need to go to the extremes that Quart profiles.

Of course, having said that, after visiting Calit2 and seeing Jerry Sheehan's jaw-dropping presentation of Larry Smarr’s extreme self-tracking work, I can better appreciate how important it is that we have those who DO go to the extreme, for the lengths they go can benefit us all.

The story of Larry Smarr (the director of Calit2) and his tracking of hundreds of biomarkers, his symptoms and the bacteria populations in his gut has been well described (his recent TEDMED talk is a great overview), but seeing the visualizations his team created to make sense of all of the test and observational data is a powerful experience. Smarr's journey of discovery, to seek an understanding of how his symptoms (he has a form of Crohn's disease) relate to his biomarkers and the prevalence of different bacteria shows how important an individual quest can be. The analysis generates new questions and hypotheses about why different biomarkers can presage difficult episodes and how varying concentrations of certain bacteria are associated with different forms of inflammatory bowel disease. In short, the quest highlights the insufficiency of medicine's understanding of this type of disease and offers clues that can lead to better understanding— the whole point of the Health Data Exploration project.

Each individual who tracks her fitness, her sleep or any of the many variables Quart profiled in her article, can gain insight about herself. But imagine how much insight we could gain if scientists could look at the aggregate data of millions of individuals? Imagine if everyone with Crohn's or ulcerative colitis could track all that Larry Smarr has recorded. Think about how much more we would know about those diseases.

This commentary originally appeared on the RWJF Pioneering Ideas blog.